Friday, September 16, 2011

Someone Fix This Baby!

It's been nearly a month since we received the positive cord blood results for Emmett. It's taken that long to get phone calls returned, set up appointments, and start to make sense of all of this, as everyone seems to have an opinion, and most of them differ greatly.

Initially, we took Emmett to his regular pediatrician, seeing as she was given a copy of the IgeneX report and was the first one to respond to my inquiries. She surprised me by not treating me like a lunatic for having the tests done in the first place, however, I could tell by her careful wording that she was not into playing Lyme doctor and wanted to pass us off to a "specialist" as quickly as possible. Ultimately, I was grateful for her kindness and willingness to listen, and for her general concern about our baby. I sensed she had a strong opinion in there about the diagnosing and treating of Lyme in children, but instead of taking a side, she honestly and professionally stated that she was not familiar with IgeneX testing and didn't understand what the tests meant. I have no problems with a doctor who says, "I don't really know what to make of this--I've never heard of cord blood testing, so let's have you take Emmett to see the Infectious Disease doctors as the Children's Hospital. At the very least, they can test his blood, and they'll be gentle about it since it's hard to get blood from a newborn, and they're skilled at it."

I cringed when I heard the words "Infectious Disease," and immediately began imagining an appointment filled with ridicule and anger. Not only do ID doctors in our area not believe in congenital transmission, most of them are hostile toward the idea of Chronic Lyme to begin with. However, my husband and I decided that since we were eventually going to see the guru of all pediatric LLMDS, we would also give the ID docs a fair shot and let them test the way they were going to test. We would then make an educated decision based on what we heard from both sides of the fence. That way, in the end, we couldn't say that we didn't explore all options.

It was extremely difficult to get an appointment with the pediatric LLMD. He was not accepting new patients and was booked through December for current patients, but a number of factors played a role in helping us get in this week. First, this doctor is familiar with my LLMD, and I had my LLMD's office call on my behalf to see if we could get in. Second, I was persistent without crossing the line of being annoying (I hope anyway) and was as kind as I could possibly be when I called each week to see if anything had opened up. Third, we were dealing with a newborn, and they take that very seriously. Fourth, we had a positive blood test going into it, so they knew the problem would have to be addressed. FInally, I did a desperate thing: I called them up, cried a lot, and pleaded with the receptionist to help me. Not sure what did it, but we eventually got an appointment. Huge sigh of relief.

Before I get into the appointment part, I should add that we went back to the pediatrician a day before our LLMD visit to talk about getting Emmett on some medication for his terrible reflux. For the record, we have the most miserable baby on the planet. No joke, this kid can cry for five hours straight without a single break, and it kills us to hear him in such misery. Reflux is a sign of Lyme in an infant, and I was scared. Mostly, I wanted to at least get his symptoms in check so the poor thing could sleep and feel some relief. When I told the pediatrician that we were going to see a Lyme specialist the following day, I was disappointed at her reaction, but also relieved that she finally let her real feelings out.

She very passionately stated that she advised against it. "Those doctors are a sham. the only doctors qualified to diagnose and treat Lyme are ID doctors. Anyone else is taking you for a ride. It's your baby, obviously you can do what you want, but I would never to take my own child to one of those doctors. It's a bad idea."

I wanted to tell her that those sham doctors saved my life and got me out of a wheelchair within 3 months after her "qualified" doctors caused me to miss out of all of my twenties, but I knew it wouldn't get me anywhere. Plus, she's just a pediatrician. Her job is to check my kids ears when they hurt, look at rashes, make sure they're growing right, and give vaccines when they're due. I don't expect her to know the ins and outs of Lyme (though all doctors should--but that's a different story). So I looked at her blankly, a little shocked, and curtly said, "OK."

And that was that. We got a referral for a GI specialist (needed to prescribe Prevacid for a baby), and we left. I spent the rest of the day a little offended and pissed off, but realized later that even though what she said was rude, the tone of her voice told me that she was candidly speaking as a mother and not a doctor. She was trained a certain way, and probably had visions of an evil quack doctor pumping my sweet little newborn full of IV antibiotics until he either reached adulthood or started genetically mutating. Her strong reaction actually showed me that she cares about my kids. I know it doesn't come across that way in writing, but take my word for it, she was just trying to look out. Regardless, I was still pretty miffed.

The next day we saw the sham doctor. He did not try to steal my wallet or hang healing crystals from my baby's neck. He didn't even try to get a hair sample for a voodoo doll or jab him with five IV lines at once. In fact, he did the opposite. He told us that our baby did not look like a Lyme baby (more on that and reading test results in the next post), that he would send his blood out for testing, but he appears to be a Lyme free child whose only problem is a whopping case of reflux. No treatment necessary, but if the tests happened to come back positive, he would be given an oral course of antibiotics, but nothing drastic or damaging.

"But my baby cries all the time. He has terrible reflux. His skin is red and itchy. He's had infections!" The more I tried to make a case for Lyme, the more he sounded like a rational person and not a Lyme-obsessed doctor.

"Your baby is in pain because his throat is burning. You need to see that GI specialist. His joints don't hurt, he has some eczema, and sometimes belly buttons get infected. These are all normal baby things that are unrelated to Lyme. The reflux is a symptom in some Lyme babies, but it's also very common in otherwise healthy babies. We can't diagnose Lyme based on that. "

Another sigh of relief.

To add a strange and funny twist, this afternoon we got a call from the children's hospital, reminding us of our upcoming appointment with doctor Henry Feder. Wait a minute. That name sounded familiar. I plugged his name into Google and remembered--he's that steaming pile of excrement that has made it his personal mission in life to discredit LLMDS and tell the world that Chronic Lyme doesn't exist. Why in God's name would we spend our very last bit money to have an arrogant man lecture us about how it's not possible to give a baby Lyme (regardless of how many documented cases there are)? No thanks. That appointment will be canceled first thing Monday morning. Our hearts belong to Dr. Sham.


  1. babies are soo nic your picture selection is outstanding i like it soo much

  2. Thank you for your posts. I am a doctor with a persistent Lyme infection who would like to have a second child, and making the decision for how to proceed still has me worried and confused. Just so you know, well before my infection, my first child had TERRIBLE reflux and colic which lasted longer than I'd like to remember. But she turned out to be the healthiest, happiest, smartest child. (though we are still shell-shocked from those early months) Don't underestimate the benefits of a pharmaceutical grade probiotic for your baby, as well as exploring food sensitivities as a source for irritations, can make a world of difference. And, enjoy your beautiful, perfect baby boy. Keep in mind all the crazy organisms we all carry around all the time, the vast amount that we don't really even know about or understand completely yet. And generations have been fine with those- they have often evolved with us.

  3. I am so glad to hear that this is moving forward in a positive way! It seems like your baby will do great with all the hope, intelligence, and planning that is going on around him. Sara, do you mind sharing any (or all) of your doctor's contact info...I live in CT too and the more referrals I have the better. Your blog is really inspiring and it seems you have done so much homework in finding doctors who work well with you. My email is if you feel comfortable sharing any info. Thank you!

  4. Wonderful news! And what a cutie he is!
    You are a great mom!

  5. Wow! He could tell by just looking at him, crazy. I have taken my second daughter with me to my Lyme appointments and I was pregnant with her when I had but did not know I had Lyme. My Dr. does take time to observe her but we have not had her tested yet. She has had health issues but who knows really if it is related. I am having my 3rd in December and am doing the cord blood testing and have read your posts about that a few times to make sure I know what it is all about. Did you have your breastmilk tested also? I can't remember if you did. Anyway, thank you for the update. :)

  6. Hi Sara and all:

    I am wondering how/where to get cord blood and breast milk tested? I am not pregnant yet, but simply looking ahead to what I will need to figure out. Thank you anyone for any info/help in this!

  7. I've been waiting for an update. Of course, I know it's hard to find the time when you're overwhelmed with higher priorities. I'm glad to read you have a positive plan in place with the sham doctor. As a mother and a pediatric RN, I believe and always tell other parents, "you know what's best for your child." Best.

  8. Your story is so inspiring. My whole family has Lyme. Our first child is adopted and we are really wanting to have our second child biologically but are so scared of the Lyme. Do you mind sharing your personal info with me so I could contact you via email. We are not part of a big Lyme community and just being able to touch base with you seems so helpful in trying to make our decide on what step to make next. Thank you in advance for your time. I can be contacted at Thank you so much to contacting me if you have a chance